State unprepared to deal with wandering dementia patients

Sam Counts' daughter Sue Belote and widow Donna in the Spokane Valley house from which he went missing in November 2012.

Sam Counts' body was found near his car a week after he disappeared.

Investigatewest

Family photographs of Sam Counts of Spokane. After a day of Christmas shopping, he drove to the store for bread. His body was found a week later in a remote area.

Investigatewest

The Alzheimer's Initiative training in Salem, Ore., in May prepared first responders to serve and protect people living with Alzheimer's or dementia. Here Norm Tollefsen, a patrol officer in Tualatin, Ore., discusses Silver Alert, which neither Washington nor Oregon has enacted.

Sam Counts' daughter Sue Belote and widow Donna in the Spokane Valley house from which he went missing in November 2012.

Sam Counts' body was found near his car a week after he disappeared.

Investigatewest

Family photographs of Sam Counts of Spokane. After a day of Christmas shopping, he drove to the store for bread. His body was found a week later in a remote area.

Investigatewest

The Alzheimer's Initiative training in Salem, Ore., in May prepared first responders to serve and protect people living with Alzheimer's or dementia. Here Norm Tollefsen, a patrol officer in Tualatin, Ore., discusses Silver Alert, which neither Washington nor Oregon has enacted.

In the first decade of this century, the number of elderly Washington residents living with Alzheimer's disease increased by a third. That number is expected to balloon by a third again by 2025. Crucially, 6 in every 10 of those diagnosed with Alzheimer's, and many with other forms of dementia, will wander or get lost, placing themselves and sometimes others at risk, according to the Alzheimer's Association.Wandering behavior has become increasingly familiar. Yet the state is not prepared to deal with this emerging public health threat. Few police departments have policies or training to educate officers about Alzheimer's or dementia. An Amber Alert-like system set up in 2009 to help find wandering people is underused, its coordinator acknowledges, and bills to create a formal Silver Alert system like those in more than 20 other states foundered in both houses of the Legislature this year. Washington is also one of just six states that haven't started work on a statewide Alzheimer's plan, even as the population at risk of wandering surges."This is really ironic when you consider Washington's historical willingness to be out in front," says Bob Le Roy, president and chief executive officer for the Western and Central Washington chapter of the Alzheimer's Association.Le Roy's group began to lay the groundwork for a statewide Alzheimer's plan five or six years ago, but it stalled during a freeze on new programs during the economic downturn.Over the last 16 months, at least seven people from Washington have died as a direct result of wandering, according to an analysis of media reports by InvestigateWest and interviews with law enforcement officials. The exact number is unknown; no public record is routinely created when wandering is a contributing factor to death, and no state agency keeps such a tally.Sam Counts is a telling example. After a day of Christmas shopping and living at home in Spokane Valley with early-stage dementia, he drove to the store for bread. His body was finally found a week later on a logging road near Mount Spokane State Park -- and then only after the county Sheriff's Office put a search helicopter in the air. His pants were caked with mud, and a flashlight was found nearby, according to the autopsy report."He'd been to the bread store a million times," his wife Donna Counts told InvestigateWest in a recent interview. She took a deep breath."I shouldn't have let him go."Similar stories across the state suggest the problem is more common than many public safety officials realize:•In September 2012, a 79-year-old man with dementia went missing by car from an independent living facility in Seattle. He stopped at a gas station in Oakland, Ore., five hours south of Seattle, and a month later was found deceased on a logging road in the Willamette Valley.In October 2012, an 80-year-old man was missing for 45 days before his body was found at the bottom of an embankment less than half a mile from the Sedro-Wooley memory care center he had wandered away from. Search and rescue volunteers using horses, dogs, helicopters, thermal cameras, boats and hydroplanes had not found him.In January 2013, neighbors in Anacortes reported an elderly man missing after they had not seen him for several days. After days of searching by the local police department, his body was located in a wooded, wetland area not far from where he lived.Over the last five years, there have been at least 33 media reports in Washington of persons with dementia who have been found safe. King County Search and Rescue has responded to 10 cases involving Alzheimer's or dementia since the start of 2012, all of which ended safely. Countless other cases are not reported to the police, not reported in the media, or both, according to experts.There is no mandatory waiting period to report endangered adults as missing. That can happen in the first hour that someone with dementia is missing, authorities say.Search and rescueIn Steve Wright's long policing career, he has seen most every kind of search and rescue mission. And he has seen Alzheimer's up close. His mother-in-law had the disease before she passed away, and he, his wife and his daughter all became caregivers."It's a hard, hard row to hoe," he says.In May of this year Wright stood before about four dozen police officers and other first responders at the Oregon Public Safety Academy in Salem, trying to share enough information about Alzheimer's so that when those in the room encounter it on the job -- and it's only a matter of time until they do, they were told -- they can react appropriately. It was the first such training in the Northwest organized under the auspices of the International Association of Chiefs of Police.Wright shared stories of his own mother-in-law, who remembered living with her husband at a military base in Alaska even as she would forget to eat. She once ran off the Meals on Wheels driver with a meat fork."Laugh, that one's funny," Wright urged his audience as he recounted his mother-in-law's escapade.Soon Wright ventured into wandering:"Sixty percent of Alzheimer's patients who wander, if not found within 24 hours, are going to die. Eighty percent if not found within 72 hours are going to die.""I don't know how to say it any plainer than that."On foot, wanderers tend to stay in the community, and most are found near where they were last seen. Seventy-five percent are found within 1.2 miles in flat, temperate areas such as Eastern Washington, and half are found within half a mile, according to Robert Koester, author of Lost Person Behavior. When a vehicle is involved, the search radius immediately grows, but even then, there are clues for where to look."Often they're going to where they used to live, or perhaps where they used to work," says Chris Long, the state's search and rescue coordinator. "They have some destination in mind."Remarkably, just half a decade ago little of this was known outside of search and rescue circles. The police chiefs' Alzheimer's Initiatives program, which organized the recent training in Salem, launched with funding from the U.S. Department of Justice in 2009 to help police and other first responders learn how to protect and serve people with Alzheimer's, including those who wander."The training and preparedness of law enforcement agencies is all over the map," says Amanda Burstein, the group's project manager.The police chiefs' most urgent recommendation is a written policy on Alzheimer's and dementia for every police department, and a model policy was included in materials everyone at the Salem training received. "There are characteristics of a wanderer when dementia is in play versus" -- Burstein uses air-quotes here -- "a typical missing persons incident."In interviews with police departments and sheriff's offices in Washington where wanderers have died or gone missing, InvestigateWest found just a handful are aware of this distinction, and only one -- the Anacortes Police Department -- reported having formal training on wandering behavior. Others acknowledged a need to do better.The Yakima County Sheriff's Office keeps a copy of Lost Person Behavior, a search and rescue manual by Robert Koester. The department doesn't have a specific policy or procedure in place for wandering, said Sgt. George Town, search and rescue coordinator for the county, but informally he follows the book's guidance. "These are folks that can be in imminent danger, they need to get found and get back pretty soon," he said. "To us the diagnosis makes no difference," Auburn Police Department Commander Mike Hirman told InvestigateWest in April. When asked about the Alzheimer's Initiative, Hirman wasn't aware of it but invited a patrol briefing or training for his officers. "We'd be open to understanding the characteristics of dementia patients. That would be helpful to know," he said.At the training center in Salem, only one hand in 40 went up when Wright asked which departments already had a policy specific to dementia.Wright repeated the call for a written policy:"I encourage you to invoke one of these because there's a high likelihood if someone's found 100 yards away after searching the whole county, it kind of makes your organization look a little goofy."The training gap and possible solutionsWashington is a national leader in search and rescue. In recent years, however, government belt-tightening has hindered efforts to better prepare and equip local law enforcement to handle missing person cases involving dementia, according to interviews by InvestigateWest.The system appears to have broken down in the face of limited training opportunities for local law enforcement to learn about dementia and, at times, reluctance at the local level to utilize the tools available to law enforcement agencies. Outside of law enforcement, few systems are in place to help families and communities learn about, prepare for and respond to the growing number of individuals with Alzheimer's and dementia and prone to wander.Bill Gillespie is president of the state's Search and Rescue Volunteer Advisory Council, which oversees an annual conference and tracks search and rescue missions across Washington.The types of searches "are changing," he says. "We are seeing a significant number of what we call walkaways."Even so, Gillespie guesses that as many as a third of all wandering cases that get reported never cross his desk. Local police are sometimes reluctant to call for search and rescue volunteers, and incur the related costs of doing so, when so many cases are wrapped up so quickly, he and other experts say. He'd prefer to hear about every one."We've made it very clear to law enforcement," he says.In 2009, the state gave local law enforcement a potentially helpful tool, but it's been underused. The Endangered Missing Person Advisory, an analog to the better-known Amber Alert system for missing children, is designed to alert the public when an at-risk individual goes missing, a classification that includes not only Alzheimer's and dementia but also mental illness. When one of these emergency notifications is activated, law enforcement agencies in the state are notified, along with ports of entry, media and members of the public who have voluntarily subscribed.Only in the last 12 months have law enforcement officers have been able to issue EMPA advisories through a web portal, and no advisories were issued through the portal in 2012, according to Carri Gordon, Washington's EMPA coordinator. One reason: no one had yet received training on how to do so.Even this year, "It's been used not as often as it should be," Gordon acknowledges.Two bills to create a companion to EMPA called Silver Alert failed to make it out of committee. Since 2006, more than 20 other states have enacted Silver Alert legislation, most recently New Mexico and California, where the program contributed to the safe return of an elderly California man less than 48 hours after it went into effect.With or without such legislation, experts say, police agencies need to get used to the idea that it is police officers who families and caregivers of people with Alzheimer's disease or dementia are going to turn to when one of their charges wanders.Police are the ones who can tell them there is information available from Area Agencies on Aging and from local chapters of the Alzheimer's Association. And that radio and GPS-based technologies are available to track the location of people at risk, and they are increasingly sophisticated about when and how they alert caregivers of wandering behavior.In reality, local police are more and more working on the front line of public health when it comes to wandering behavior."Not only do they have to have the expertise to conduct proper searchers," says Wright, "they need a proper knowledge about the disease and what's going to occur.""That trend is not going to change," he says.Additional reporting by Daniel Kopec/KCTS 9. InvestigateWest is a publicly supported nonprofit newsroom for the Northwest. Follow InvestigateWest at //www.invw.org.On the WebWandering, a half-hour television special produced by KCTS in association with InvestigateWest, is available along with additional material at www.invw.org/wandering or www.kcts9.org/wandering.

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